Rare Diseases: Health Services

Department of Health and Social Care written question – answered on 24th June 2022.

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Photo of Baroness Masham of Ilton Baroness Masham of Ilton Crossbench

To ask Her Majesty's Government what steps they are taking (1) to improve access to specialist care, and (2) to reduce regional health inequalities, among patients with rare diseases, including those with hereditary angioedema.

Photo of Lord Kamall Lord Kamall The Parliamentary Under-Secretary for Health and Social Care

In February 2022, the England Rare Diseases Action Plan 2022 was published, which aims to improve access to specialist care, treatment and drugs for patients with rare diseases, including hereditary angioedema (HAE). The Plan commits to support access to new treatments through programmes such as the Innovative Medicines Fund, while continuing to work with National Institute for Health and Care Excellence (NICE) on new treatments being assessed. Following the updates made to NICE’s methods and processes, the Plan aims to ensure that NICE continues to support the rapid adoption of effective new treatments for National Health Service patients with rare diseases.

The Action Plan also contains actions aimed at addressing health inequalities, including monitoring the uptake of drugs for patients with rare diseases, through measuring the number of people accessing a drug and comparing with the number expected to access it, to ensure equal access to treatment. It also commits to reduce health inequalities in NHS highly specialised services. A copy of the England Rare Diseases Action Plan 2022 is attached.

The NHS Commercial Medicines Unit is developing a procurement framework for medicines to treat HAE. It is anticipated the framework will be operational in summer 2022. The NHS Immunology and Allergy Clinical Reference Group will also revise current commissioning policies for HAE treatments to reduce health inequalities in England for these patients.

England Rare Diseases Plan 2022 (pdf, 529.6KB)

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